A Living Lab for Family Centered Knowledge Exchange in Pediatric Rehabilitation and Development Research: A Study Protocol

Abstract

Background Historically, the experiences and voices of children and youth living with neurodiversity or rehabilitation needs and their families have not been fully represented in health research. Formative research in this context indicates that families value learning from the experiences of other families as well as from empirical research. However, innovative systems are needed to support this imperative. In response, we co-designed a virtual living lab with families and clinicians to support family-centered knowledge exchange in neurodiversity and rehabilitation research. Living labs are collaborative, user-centered, long-term, and multimethod systems with potential to support the exchange of knowledge of lived experience. This proposal outlines a longitudinal arts-based and qualitative research study that incorporates storytelling as a powerful tool to elicit and exchange stories of lived experience through the virtual living lab, and subsequent usability testing of the platform. Methods and Analysis Stage 1- We will conduct an integrated knowledge translation study inclusive of user centered lab design and construction. Stage 2- We will conduct a 6-month longitudinal qualitative storytelling study with 30–40 participants including neurodiverse children and youth ages 5–19 years, their siblings, and parent/guardians, guided by the F-words framework which is based on the International Classification of Functioning, Disability, and Health. Following user-registration within the virtual lab, participants will complete a minimum of 1 story monthly, accompanied by an arts-based component, for 6 months. Conclusion Findings will inform the co-development of an arts-based knowledge translation resource to communicate key findings. Stage 3- A subset of families will be sampled to complete usability testing of the living lab platform and storytelling feature using a sequential explanatory mixed methods design. Usability evaluation will inform future platform refinements and provide indications of acceptability and use across subgroups.